Sam. Conqueror. Overcomer.

On the 15th May 2009, Samuel Christian made his way into this world...two month's premature and in severe respiratory distress. Within hours, Sam was diagnosed with Rubinstein-Taybi Syndrome - a very rare congenital disorder, of which little was known. The diagnosis together with the immediate challenges Sam faced to thrive became our core focus and it was with joy and thankfulness that we eventually brought Sam home, after nine weeks in the NICU.

As time pressed on, it became obvious that Sam's development was falling behind that of his RTS peers. Shortly before his 5th birthday Sam underwent a brain scan and it was confirmed by a paediatric neurologist that in addition to Rubinstein-Taybi Syndrome, Sam also has Cerebral Palsy related to his premature birth, as well as Autism.

This blog chronicles our journey through these challenges...
SAMUEL - COMPLETE IN GOD
Our world has crashed, been blown apart.
This can't be happening....why us? Why now?
Your fragile life shaken before it could barely start,
How do we get through this...please, Lord, tell us how?

Drowning in our sorrow, waiting for answers that just don't come.
Our baby "special needs"? It simply can't be true!
The heartache overwhelms us, we're left feeling cold and numb.
The diagnosis tells us little - these children are so few.

But then we finallyget to touch you, to see your precious face
And all the heartache and questions fade, replaced with love and pride.
It's obvious from the very start you're showered in God's grace,
And with His love and guidance, we'll take this challenge in stride.

When once we couldn't pronounce it, Rubinstein-Taybi's become our norm.
When once the future seemed dark, we now welcome the journey as having an RTS angel brings lessons in unexpected form.

Our world has crashed, been blown apart!
This IS happening....to us.....right now!
We've been blessed with a gift, so precious from the very start. How do we get through this? Here's how.....
By believing in a God, so merciful and great,
By trusting that He's right beside us as we journey through the narrow gate.
By believing His love for us is not determined by a human frame,
By trusting that we draw Him near by merely calling His name. This precious baby we asked God for,
Prayed he'd be perfect and complete.
And, as Samuel means "God hears", He's laid His answer at our feet.

(Nicky de Beer : 27/05/2010)

Wednesday, July 21, 2010

TIGHTROPE LESSONS

I was watching a documentary on tv one afternoon last week ("watching" meaning parked on the floor surrounded by various toys/activities with Sam on my lap, simultaneously pressing and singing along with the various melodies, while trying to lipread what's been said on the tv). This particular program was about developmental, intellectual and emotional milestones of one-year old babies and the various factors which influence the timing/mastering thereof. So, needless to say, it was not the most uplifting thing to have watched (I shoulda just stuck with Barney or Mickey Mouse Clubhouse) and I had to keep reminding myself that a) these were all "normal" babies and b) with the exception of one, they were also all full-term babies. I didn't think the documentary had really affected me THAT much until afterwards when, as always looking for something new to entertain Joyful Smurf, I decided to try out a few of the "tests" with Sam and he only seemed able to work through the one task, which was sitting face-to-face with baby and then placing a sheet of paper between the two of you, the objective then being for baby to move the paper aside to see you again - which Sam did actually do. It was a little disheartening, but oh well - we went along our merry way through the next few days....or did we?

I am not sure if it was watching that documentary or something else completely but over the past few days I have found myself frantically trying to help Sam "catch-up" to where he should be developmentally...and it is EXHAUSTING! Now, let's first understand that Sam is nowhere near being neglected or ignored, he is 95% of the time either on my arm, in his pouch, on my lap or attached by some other means and I talk to him constantly, we sing...we dance...we play and I've been fairly satisfied that he is getting a considerable amount of stimulation - but all of a sudden it hasn't felt like enough, to the point where I started timing the periods in between interacting with him, for example, I put him him down so that I can attend to something quite basic, like brushing my teeth, (I have an OCD thing about teeth-brushing...it has to be done for a precise amount of time, in a particular way, a particular order, etc) but then I start thinking like "Okay, he's been in his cot now for like 3 minutes - is it okay for him to have no stimulation/interaction for three minutes?" and then almost every morning I land up standing next to his cot, spluttering some-or-other kiddies song through mouthfuls of toothpaste. Another example - I take Sam for a walk in his pram most afternoons. We only walk for about 30 mins and he usually kips for most of that time, but yesterday afternoon he didn't fall asleep AT ALL and I kept looking into the pram and he just appeared to be staring into space and I started worrying about how long it would be okay for him to just lie there and found myself hurrying the walk up, just to get home and onto something else. And that's basically the essence of how our days are being spent....okay, we've sang songs now for twenty minutes, time to press buttons on Noah's Ark to hear the different animal sounds...okay, time now to walk around the house and point out different objects and say their names...it's like running an endless race.

So I am really battling to find that perfect balance between providing Sam with just the right amount of stimulation for it to be beneficial without going overboard and having either him or I landing up like those cartoons you see on tv where the person's head starts whizzing round and round and round, faster and faster, smoke starts erupting out the top and next thing the whole head EXPLODES! I am in desperate need of some tightrope lessons to help me figure out how to walk this RTS line because one minute I am dangling precariously on one side by my little finger, manage to pull myself up to a kneeling on all-fours position....and before I can even manage to stand up....FFWHHOOOOPP! I'm hanging off the other side again!

7 comments:

  1. I'm with you on this one but unfortunatly i have no idea how to help... I hope your able to find a good balance of things;) and know its ok to brush your teeth while he lays there:)

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  2. Hi Nicky! I promise I read every single one of your posts, but apologise for not making my presence known more often. I suppose it is because I am usually in such a hurry to get back to stimulating my children before I scar them for life by spending twenty minutes on the computer. So see, it is DEFINITELY not just an issue for RTS moms! I guess it has something to do with that guilt thing that seems to be a non-optional part of motherhood.

    I have by no means overcome this ridiculous tendency to want to stimulate my children all day long yet, but I keep working on it. What has helped me a lot is, first, the idea of 'strewing', ie leaving things out for my children to discover on their own time at at their own pace, and secondly, being OK with it if they are not interested or adept yet. More imprtantly, though, is that I think we underestimate the tremendous influence our mere presence during the busy hours of every day has on our children. Think about it: you spoke to Sam today, casually pointing things out to him or describing what you were doing. You were 'bathing' him in language, all the while 'teaching' his brain complex things like grammar and syntax and rhyme! He hears the changes in intonation as your emotions change - I can hear mommy is happy now, or oh, now she is upset with the dog! Carrying him on your hip from bedroom to living room in the normal course of the day, everyday, you are helping him make sense of his spatial environment (a mathematical skill!) You stimulate his senses by having him in the sling while you cook. That walk in the stroller: you know, my *normal* one year old also just usually lays there. But even if he seems totally oblivious, his inner-ear, the part that helps with balance, is registering changes in road surface: now we are on gravel, now on grass. And besides, what can be more educationally valuable than quietly taking time to just stare at God's beautiful blue heaven!

    I'm not saying we shouldn't sometimes challenge our children a little, or put in a little more effort at times, but we should also not underestimate the learning that takes place, without us knowing it, in the course of a *regular* day when we are not intentionally trying to teach them.

    I read an article a while ago that encouraged moms to make a "have done" list at the end of each day, as opposed to a to-do list at the start of it. I think if you go write down everything you DID do with Sam today, you will amazed at the teachable moments you have created for him just by having him with you.

    PHEW! I did NOT mean to write that much, sorry! I guess I needed to put all that on black and white for myself more than anyone else! Let's just breathe and relax and keep loving them - the rest is small stuff!

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  3. Aawwhhh - thanks heaps guys! Grietjie, please don't apologise for your wonderful input - I valued every word you wrote, wish I could publish your comment as a blog post because I am so sure it would be as beneficial to so many other moms as what it was to me!

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  4. Hi Nicky, I am jodie’s granny and her “daycare provider” I feel so blessed and fortunate for Marcel and Vickie’s decision to leave her in my care every day and trusting me to contribute to her development.

    I enjoy your way of writing about Sam , there is always something humorous about it and that is why I regularly follow your blog – you make me smile!!! I think Jodie is getting annoyed with Twinkle Twinkle little star, Row your boat, and all the other Afrikaans songs that I use to sing to my kids so I bought CD’s and now I have to learn the songs all over again.

    After reading your latest blog, I’m convinced you have a spy (maybe a fly on the wall) come to my house, watch and listens and then reports back to you. You then post my experiences on your blog. :-)


    Jodie and I can associate with so many little things you are experiencing with Sam .

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  5. Hi Engela - I think that Jodie is just as blessed and fortunate to have such a wonderful Granny to look after her during the day, she's a very lucky little girl! It's great to feel that you are not alone & have someone sharing your experiences with you, its also awesome for moms and grannies to be able to share tips & ideas! I so hope that Jodie and Sammy have to opportunity to meet each other one day! Hugs & Kisses

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  6. Hi Nicky, you are the most amazing Mum to Sam and it shows in how he has grown and moved forward in such a short time. Its sometimes hard to notice when you are so close to him all day but from the outside it is very noticeable. Another way to judge is to look where you have come from with him and then compare where you are now......wow you are doing a wonderful job. Lots of love A

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  7. Hi Nicky
    As others have said - I can really relate to you. That panic one feels when one thinks one haven't been doing enough for your child... I am in the process of reading an interesting book called When slow is fast enough...written by an educational psychologist in the USA and it gently questions the need that we as society,gov, schools, teachers, therapists and parents have to make our children catch up to what is normal. In fact she points out that sometimes if we are so focussed on the catching up, then the intense stimulation, repitition, and focussed learning - can actually undermine our kids' natural curiosity and learning which happens at a slower pace but still happens. Don't know if that makes sense. It has helped me relax a lot. It has helped me to focus more on creating a exploring and curious environment where Matt can discover at his own pace, rather than try to teach him things. And it is hard with RTS kiddies - a lot of them don't really let on that they have learnt the mini-steps along the way, and it seems like no development is happening. ANd then out of the blue they do something (usually completely unrequested from you and not expected at all) that shows they have been aquiring loads of skills and information. Like Matt didn't show that he is interested in kicking a ball - despite balls being around and us encouraging play. Then one day he just starts kicking as perfectly as if he has been doing it all along. It startled us, but secretly his brain has been working on it all along without letting on. These unexpected but brilliant moments have given me faith to trust that he is learning even if he doesn't show it. And it has taken off the pressure for him and me to perform. This is a looong post! But it is a subject close to my heart. PS I HATE anything: assessments, books, charts, etc - anything that directs me to compare Matt to "normal development" - always makes me frustrated, but you can read more about on my blog. I'll spare you the rant here :)
    Anyway - sending you BIG HUGS - hope to visit soon. Jacqui

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